In Their Own Words – 7 Years of Autism

This “In Their Own Words,” is written by Kammy Kramer, the Autism Speaks Family Services Community Liaison for the Minnesota Walk.

Autism became part of our world 7 years ago this month – and what a wild ride it’s been. Wow, looking back from this vantage point, it seems like a lifetime ago, and in many ways it was. It rocked our world a thousand times over, and set us off on a journey we hadn’t planned for and were ill-prepared for.

The early years were heart wrenching and overwhelming. Elliott didn’t have language or a way of communicating his wants and needs with us, and struggled with severe aggression – towards us, the general public, and his then infant brother, Henry. There were days that his autism was so big that the symptoms that accompanied his diagnosis seemed to fill every corner of our world.

As time has passed and so much has changed, there is much about the early years that I don’t remember. Maybe it is a way of protecting myself, maybe I can’t always handle thinking about the heartbreak we lived through and/or maybe I just hit 40 and can’t remember much of anything. What I do remember, quite vividly, is the isolation we felt in the beginning years. It hurt so much to see him struggle, and not intuitively know how to help your child.

It was no less painful when our sweet Ada began exhibiting the early warning signs of autism that we knew all too well. While her symptoms have never been as severe as Elliott’s, it hurt all over again to know the many struggles and challenges that she would need to work through. It felt unfair – it felt like just as we were finding our way as a family living with autism that suddenly autism defined us. At that moment, it was too much.

Everyone deals with grief in their own way, and has to find their path to acceptance in their own time. Tom and I have followed very different journeys over the course of these 7 years on our way to acceptance. While Tom struggled more following Elliott’s diagnosis, Ada’s was like a brick in the head for me, and I can’t really explain why. Maybe when Elliott had been diagnosed, we were so busy trying to research everything and get him help that I had unresolved grief at the loss of a “typical” life. For reasons I still can’t fully grasp, I literally found myself isolating from everyone and everything outside our house in order to process her diagnosis and my grief in the only way I could. It was almost as if I had to allow myself to walk straight through the pain rather than trying to step around it before I could make peace with it. I’m grateful to be in a much better place now, but appreciate that the experience has allowed me to gain perspective on the various struggles we all face.

Enough with the ugly stuff.

Last week, something momentous happened at our house that we’ve been excited about, but somewhat reluctant to share. Elliott started 3rd grade as a full-time student at a school for the first time in his life. This is such an amazing accomplishment for him – he’s overjoyed to have a school to call his own. He so wanted this for himself, and has worked incredibly hard on skills that for most kids develop naturally in order to accomplish this. With determination, he set a goal and made it happen. Like most new experiences, school will certainly have its share of successes and areas for Elliott to continue working on, (it already has as evidenced by today’s report card) but we celebrate his achievement because it is his to own. He continues to teach us so much.

Ada is now 4, and is doing amazingly well! Her symptoms at diagnosis were not as severe as Elliott’s, and she is responding very well to early intervention. Because of our family situation and our amazing team of therapists from the Lovaas Institute, we identified her challenges very early, and got her the help she needed immediately. Now, at 4, she is making incredible gains, is quite the social butterfly, and is happy and very interested in her world. We love watching her personality develop (most days!) and cherishing the bond that she has established with her brothers.

Then their is our sweet, sensitive, charming 8-year-old, Henry. He’s neuro-typical, and holds the middle child position in this family sandwiched between a brother and a sister with autism. As many families with special needs may relate, we’ve struggled over the years to find balance so that Henry does not grow up resenting autism and the attention his siblings have needed. He’s a great guy who found a way to express his unique perspective of the world through his art. It’s abstract, of course.

We participated in the Minnesota Walk Now For Autism Speaks, and look forward to having some fun with lots of other families and friends who are part of the autism community. While our journey with autism continues, we are grateful for many things. We will walk to celebrate how far we have come. We will walk because we have a very excited 3rd grader who now has a school to call his own. We will walk for a little girl who has made incredible strides in her young life, loves her brothers, and looks great in a tutu. And we will walk for their brother, the middle guy, who chooses patience and compassion even on his most challenging days, because families are families, no matter what . . .

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

I was so touched by your story. Not an unfamiliar one as my family is almost the same. Three children, 2 on the spectrum sandwiching the NT middle child. Although mine are older, I am in awe of your grace, committment and genuine honesty. Your story just makes me wish that we lived closer to you as we are in New York because rather than go through this alone, we could at least share a meal and not have to explain away our children. We could just sit back and enjoy them with all their unique challenges and gifts. Best wishes.

Thank you for sharing this!! I’ve never had to fully deal with autism in my family, but know families that have. (Like yours, as I work with Tom.) Your words are great in giving the understanding, so that I can help those that I know who are going through this struggle. Your hard work is paying off. May God keep you strengthened to continue this journey and be there as you rejoice in each step forward that is gained!! Congrats to Elliot for his hard work to get to a full time 3rd grade class. Keep up the hard work as you are doing a GREAT job!!

What an expression of love and committment!! Kammy’s writing of anything either gets me to tears of pride or of joy!! I have experienced all of the emotions she expresses in this beautiful writing of their life’s experience as she and Tom have gone through these trials. They are committed and helpful to anyone needing encouragement or just an understanding person to really hear their hearts. They are wonderful parents and people and I am so proud of them!! The best of all is I have a wonderful daughter, son-in-law and three beautiful grandchildren that I am so proud of!! Love is a powerful emotion.